Starting this Journey

Many years ago, before I had children, I used to read this board regularly. Back when it was MGH communities. I learned a lot although it wasn't very useful information to me at the time. Now I wish I didn't know what I know.

My 3 y/o Hunter had several "episodes" that we now know were seizures. The first one in Feb I was getting him out of his carseat at daycare and he was not responsive and didn't help me get him out, once out he just rested his head on my shoulder. I brought him inside and set him in his chair, scooched up his seat to the desk and left. I emailed up there later asking if he was o.k. as what had happened in the morning was weird.

3 weeks later the same thing happened, taking him to grandma's house in the morning. I told her it was so weird, because it had happened once before. I left him with her but kept checking on him. First he was "fine in 10 minutes" when I got worried about it she later texted it was 5 minutes. I made an appt this day and they were suspicious of seizures. We had a sleep deprived EEG the next week and the results were normal. We were told to just watch/wait and make let them know if it happened again.

On Monday I got a call from daycare at 3:00pm that Hunter was unresponsive after his nap. I told the director to stay with him and I'd call the Dr office. I couldn't get through to the office and at 3:08 I told them to call 911. I was about 30 minutes away by then and I had texted my husband and he was also about 30 minutes away.

He beat the ambulance to the hospital and I arrived at the same time, about 3:45pm. When I walked in the room Hunter was just sitting on the gurney while they talked to him, put in a saline lock, etc. He didn't respond to anything, just looked around. Several times the Dr wasn't sure if he was still seizing or having additional seizures or just postictal. Around 4:15 he started coming around a little. We were discharged by 5:00.

Pedi on Tuesday morning. My husband brought up that Hunter's been limping without any sort of obvious injury. She manipulated his legs and no pain indicators at all. She referred us to the children's hospital neurology clinic and for an MRI. MRI is tomorrow afternoon. The neuro appt is may 16th.

I'm concerned that the MRI may be to look for tumors. With the worsening seizures and one sided weakness that's what comes to mind. Does that sound accurate? I'm really scared.

I'm glad that you found your way back to us, but I'm so sorry that Hunter is experiencing seizures to bring you here. Seizures are frightening, and your fears are well known among all of us. The causes of seizures are multitudinous. Some seizures are idiopathic, with no known cause. Everything from allergies, to environmental factors, to sleep, to Vitamin deficiency, to brain trauma and all that is in between can cause seizures.

All tests are scary too. But they are necessary to rule in/rule out potential causes. EEG, CT Scan, MRI, blood work exploring everything including hormonal levels, are all part of the investigation to determine cause and identify the best treatment to stop the seizures. An MRI isn't just to find tumors; it reveals everything about the brain and any possible anomalies. As hard as it is to go through all of these tests, you want them so that every base is covered to reach a diagnosis.

I recommend that you chart Hunter's daily activities: what and when he eats; any events prior to the seizures; his bowel movements and urine output; what time he falls asleep and wakes up; whether his sleep was peaceful, quiet or restless; any apparent physical changes, like the limp you described; behavioral changes, changes in speech or comprehension. Your log will be helpful to the neurologist, as a complement to the testing results. It may also help you to identify a pattern or potential triggers.

Start compiling a list of questions to take with you to the neurologist's visit. Make sure that you get a satisfactory answer to each question. Don't be afraid to probe or question further. You need to know everything to help Hunter. Take notes, or as soon as you get home and have time, write down the answers you were given for future reference.

You might also want to post in the Epilepsy forum, as we still have members there, who reply to newcomers. They have tremendous insight through their experiences.

Stay with us. We've all been where you are now, and we're here to hold your hand and reassure and support you.

Take some deep breaths and remember to take care of yourself. You're not alone. We're here.

Love & Light,

Rose

Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

Hello and welcome momtohunter,
My daughter had some episodes at 5 years old. She got weak and off balance at times. She would have a hard time sitting up in a chair. These worsened and lasted longer over time. She was eventually diagnosed with a disease called moyamoya. It was diagnosed through an MRI/MRA. The MRA part was important because it looks at the blood flow to the brain. Moyamoya causes problems with blood flow. It can cause seizures, weakness,TIA's and strokes. She went on to have several strokes. But if caught early this can be avoided. This is just something I like to make parents aware of if their child is having any neurological issues because it's very often missed by even very good neurologists. I am by no means saying this is what your child has just something to keep in the back of your mind if there are any concerns ad to the diagnosis or reason for what seems like seizures. Will they be doing an EEG also? If possible ask if they can add the mRA component to his MRI... It'll save another what I assume will be sedated scan. Prayers that this is something easy to diagnose and get controlled. Keep us posted...
Mary Grace

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